Memorial Day break

I ended up flying to Boulder, CO for the college national ultimate frisbee championships late Sunday and to be with Casey. Flying back late tonight. It was hard for Meagan for us to be separated. She's lost her sense of time so it made her upset not really understanding when Casey and I would return. Riley did a great job stepping up and supporting her including taking her to her third treatment this morning. I'm also grateful to the other friends who stepped up and kept her diverted with walks and visits. Change is hard for her to process and handle so it's something we need to be aware of and help her through carefully and sensitively. She's a natural worrier, or as another friend says, using it for exercise as an aerobic worrier. But worrying about multiple things is difficult. So it will be good to all be back together tonight.

Day One in the Bag

Smooth as silk. The place is quite impressive - high tech meets spa. Treatment itself is about 40 minutes. "Lenore" is the robotic delivery arm. It has six axles and can essentially contort into any position around the head to deliver the beams. Meagan lay on a moveable bed. It's all computer driven based on the radiation plan. I reviewed the plan with the radiologist and he showed me the concentric rings of intensity they were using around the targeted area (the boundary of where her tumors were removed). They go after a bit of margin.

So far no ill effects. She is on steroids twice a day to control brain swelling throughout treatment and then will taper off them. No indication on the MRIs from last week of any cancer activity outside the known area.

She's home and feels fine. We are keeping things loose in terms of commitments over next week as we see what side effects kick in, if any. I do have to wake her and give her steroid pills at midnight.

Cyberknife Schedule set

my new best friend, Genevive, at Swedish Radiology just called and gave me the schedule. It's five treatments - Thursday and Friday afternoon and then next Tuesday, Wednesday and Thursday mornings. We get there about 15 minutes early and the total time for the procedure is one hour - although I think the actual zapping is less than 15 minutes. I won't know until tomorrow if they are going after anything other than remnants of the previously removed tumors.

Pending....

Had our oncologist visit yesterday. Dr. Kaplan was great as usual. Meagan gets a lot of joy and comfort out of seeing him. We did get the go ahead from him to get the subcutaneous tumors removed from her stomach and back. Likely we won't be heading back to any clinical trials which require a "harvest" of tumor tissue for a while and she has two other accessible locations so it's good to get these removed as they have grown and are irritating. So we have a planning appointment scheduled with the surgeon for next Thursday with the thought of having them taken out the following week. They usually don't want to do a surgery, even an in clinic one, for a week after radiation concludes (which should be completed by end of next week).

We are on standby for when the Cyberknife brain radiation treatment starts. It could be tomorrow. We don't know how many treatments. Likely it will be 3-5. So we might have treatments tomorrow and Friday, then a break over Memorial weekend and then the rest from Tuesday to whenever. They are still developing and finalizing the plan, but have us down for the table time. Meagan has no anxiety about the treatment itself.

Kaplan did tell us there will be a longer duration between the time the brain radiation treatment ends and when she might start the Interleukin 2 treatment (which is the two week hospital stay). Like up to a couple months for the brain to calm down. This was a bit of a surprise - I thought it would be sooner.

Guess Who is Tired (Again) This Morning...

I've pretty much gotten used to not getting much sleep. Whether from anxiety or the hospital stay or our pill schedule or road trips I've taken recently - a solid through the night sleep is so rare an event I can't remember when it last occurred. So most days I need to do a power nap at some point - hardly full compensation - but helpful and I am oh so grateful that I have the freedom and flexibility to pull it off.

When the boys were teens and old enough to drive and stay out late there was a chunk of years we didn't get a lot of uninterrupted sleep - especially on the weekends or summers when they were home from college. I'd refer to it as living with vampires. It is with that in mind that we have begun rejiggering our house sleeping arrangements and done a small remodel to set the south side of the house up as the young men's wing. Both Riley and Casey will sleep on that side and be able to come and go out the south side entrance door - thus saving Meagan and me from waking up at 2:00a.m. when the party shows up at the MacPhee boy's house. We are extremely happy they have chosen to live at home, for now, even though it is driven largely by the circumstances around Meagan's disease. Their lives have been altered and future plans a bit up in the air - but being here and close to their Mom is a good thing.

Aside from the housing arrangements, it's also led to a number of discussions. Last night was one of the best nights, if not for the lack of sleep, I've had. Because Casey couldn't sleep last night and wanted to talk. So I got the 12:30a.m. wakeup knock and we sat by the fire and talked until 3:30a.m. Wide ranging and philosophical, intelligent and thoughtful conversation. I loved every minute of it. Wouldn't trade it for anything. One of the "gifts" cancer brings. But oh am I tired this morning. Being a cancer cabana boy means you have a wide ranging set of responsibilities, including a big set of ones around your progeny.

And I promised Meagan I would take her to a chick-flick today - her first movie since before the stroke. "Bridesmaids". I had better take a nap beforehand, otherwise I may not make it through the movie and be able to talk about it afterwards.

Just When I thought It Was Safe....

Right before I made the matcha tea this morning - I heard a slightly different tone from Meagan. It appears she has been affected by someone's sad reaction to her "news" or the way she is and her "nonplussed" attitude may have gone away a bit. The brain damage that gave her an "all right brain" approach and no interest in discussing or considering disease progression may be on the mend.

"I'm not going to be around very long, am I?". How the hell do you answer that question? I did my cabana boy best - told her she is a person and not a statistic, that no matter what happens we are going to live each day in the moment and live it fully, that yes, she has a serious disease, but we all die sometime and the quality of your life is more important than the quantity, and that even if we knew she was going to die in a couple months we wouldn't change anything about our lives (it's not like we want to leave friends and family and jet off around the world), and even if Dr. Kaplan at some point says there is nothing more we can do, we'd have time to take care of the things needing taken care of.

She got teary of course. But we talked about it some more - not in great depth and a with a balance of hope and optimism, but tempered with the general knowledge of the seriousness of her disease - she doesn't want to get into the nitty gritty details. So it was a difficult situation (again) but at the end she seemed ok with where she stood and how she felt, and hasn't raised it again today or shown any evidence of thinking about it or it being a traumatic discussion. So maybe the good brain damage is still helping. But it's a fine line - she wants and deserves to have some hope. Yet there is the backdrop of being in the throes of a terrible battle - one now being waged on two fronts - the brain and the body (because the treatments for one don't affect the other) that may be larger than can be overcome.

I always feel terrible after these discussions, not just because of contemplating the future and possible negative scenarios. At some level I want to share with her everything I know about her disease (treatments, outcomes, probabilities, challenges) so that we are on the same intellectual plane, which will put us on equal footing from an emotional perspective. And make us partners once again. Yet I also feel a great protective instinct and desire to keep her from the fear which puts her head in a negative space so that she can't enjoy the life she has (I do this partly from knowing her and what she wants and how she has explicitly said she doesn't want to focus there). By protecting her and softening the truth, it does make it better for her, I'm convinced. But then I've missed the opportunity. So I feel terrible because my internal conundrum is unresolved and I have to live as the one who sees it both ways.

The last thing I'll say for this post is that for those of you who read this, and interact with Meagan - do your best to be with Meagan fully and enjoy each and every moment and opportunity. Make it about life, and being positive and discussing and enjoying the experiences of the now. She's reading the paper, slowly. And is interested in the events of the day. And is always interested in your life and your relationship. But don't bring up the seriousness of the disease or issues around disease progression or outcomes. Because it's not about us, it's about her.

I can't remember which modern day philosopher said it (but I will attempt to paraphrase it while I butcher it in the process, but it was something I used with her this morning) but the gist of it is that humans are unique among creatures in their ability to essentially look down on themselves and see the span of time from the beginning of their life to the end. And we are unique in our ability to contemplate our own death. And it is that contemplation of death which sets us apart, but also gives us the knowledge and ability to appreciate and live fully the life we have now. We will all die someday - it's a question of "when", not a matter of "if". The measure of our life and the uniqueness we have is that ability to live each day fully knowing of our eventual demise. It's a bit harder for sure if you think that death may be closer than you really want. But it really shouldn't alter the way you live. Meagan is choosing, to the best of her ability, to live her life as fully as she can. I support that, and hope everyone else who comes in contact with her will as well.

The Things I Can't (yet) Write About

I'm writing about most of the things connected to this cancer. Including the transformation of being a caregiver for a cancer victim to now additionally a caregiver for a stroke victim. As an aside, the stroke in some weird ways has been helpful, which I will describe below.

But first, despite my natural inclination to be as positive and upbeat as possible, it's really hard not to note how incredibly difficult it is have someone in your life have a disease and a condition like this. It affects so many aspects of life. I am not yet comfortable writing about some of these yet, both for reasons of privacy and respect for those impacted as well as to not influence how people view and interact with our family or individual members. Especially as time goes on, and this thing doesn't seem to have a resolution. But I will start hinting around the edges of some of the issues and I will note a couple things. First, this has been just an endless downward spiral, without any evidence of arresting the disease. That unrelenting slide puts enormous pressure on everyone (except Meagan right now, who because of her stroke, in largely unconcerned). That disconnect, between Meagan and those closest to her who know what is happening, is extremely challenging and a hard burden to bear. Because you can't connect on an emotional level and share the common concerns and pain. And ultimately the best relationships are about sharing on a deep emotional level.

Yet, as I indicted above, in some ways the stroke is positive. Because without it, I would be having regular pillow sob fests with Meagan about "will I make it" and it would dominate large parts of the day. So her "normal" state would be creating a lot of anxiety and high stress and emotion. Yet it would be shared and create more of a sense of connectedness and togetherness during this march. Right now though, she wants to approach every day with joy and a focus on today. If I summed it up, I'd say it's good for Meagan, and not so good for the rest of us. Because it changes the nature of the relationship.

The other aspect of this whole thing is the impact on our boys. Who are hardly boys, but fine young men, who have grown up and dealt with more than they should have had to at this age. Suffice to say, lives have been altered (not in a positive way) and there have been and will continue to be stresses, issues needing addressing, and responses to support them. In lots of ways the process has strengthened our relationship (I'm speaking of the ones between me and the boys), and allowed us to connect on a deeper emotional level. That's a good thing, especially for guys. Yet they are also young adults and have a need to forge their own path during this journey, without relying me to "solve" the problems (not that any of them can really be "solved"). It's hard to step back and let them each work it out for themselves (with outside professional support as needed). I'm incredibly proud of how both have approached this (if proud is the right word for admiration for how they have dealt with a forced, terrible situation). But there are occasions where my timely support and intervention has proven necessary. But it's come with its own cost in terms of my time, health, and sanity. It can end up dominating periods of time and make it hard to do just about anything else but address the issue and take care of Meagan.

The last aspect is the entire relationship with Meagan. A stroke changes everything. In lots of ways she is the same. In her typical social engagements with people - one on one conversations - it's probably hard to tell she is any different. She has clearly recovered aspects that were immediate impacts of her brain insult - such as her speech, her wit, her humor and her compassion and care for others. But she still carries deficits, some of which will last forever and she has new traits, and that has an impact in two ways. One, you have to develop a relationship with a new person. Two, it puts the caretaker role more front and center, and that in and of itself has implications in terms of relationship dynamics.

Pretty cryptic huh. More details will likely come in time. But it's important to note, especially as time goes on, that we are not just "coping" with a condition. It is a dynamic and highly fluid situation, with constantly emerging new stresses and issues. Which requires information gathering and learning, discussion, responses, and coping and adaptation. All of which is a huge energy, mind and time suck. And right now we are in the middle of this huge battle to control the cancer in the brain, that it's almost out of sight out of mind that the melanoma is going about its merry business in the rest of her body. So some days, early in the morning on beautiful days like today, I look out at our gorgeous garden, and just think, WTF?????

Scan Day Today

Scan days are mostly about paperwork and waiting. Our tech for the CT scan was really great though, he explained everything that was to happen very carefully. Meagan has been through a ton of CT scans and they are so fast now it's really a non-event. What was different was the formation of the mask she will wear during the actual Cyberknife radiation treatment next week. It's designed to hold your head still because people tend to want to follow the robotic arm and that clearly would screw up the radiation delivery scheme. It's a thermoplastic material with lots of holes and after heating it up in warm water it's draped over your face and then allowed to harden. Meagan likes it because she thinks the nose looks smaller. And it felt like a spa treatment.

We then had a long wait before the brain MRI at a different Swedish facility. So we hung out at Elliott Bay Books. At the radiology place we ended up, they keep it a really cold temperature so Meagan always gets warm blankets. She also needed a little help from me getting all the metal off, she forgets what is metal and completely missed her rings. Another cabana boy duty.

All the results get fed back to the Cyberknife team and we will hear next week about the findings, the radiation plan, and the treatment schedule. Which I expect will start next week. Meagan continues to be nonplussed by all the scans and administrative stuff.

We also see Dr. Kaplan next Tuesday and update him on where we are in the process. And she wants to ask him about removing some of her subcutaneous tumors which are irritating. I believe he wants to leave them as either markers to see if treatments work or as tissue which can be harvested in a future clinical trial using T-cells.

I wish things didn't take as long to pull together so we can get going on the brain radiation. We need to get that done and get her off the steroids (which reduces brain swelling caused by the radiation) to be able to get to the Interleukin. We need both treatments of course, control of brain tumors and a shot at a systemic treatment which has a chance of putting the disease into check. They are both big deals.

"You're a Taskmaster"

That's what Meagan told me at dinner last night. With a smile on her face. One side effect of her stroke is a lack of a sense of time. So she will start something with a goal of completing it in say, half an hour, such as dressing. But she has no clue about how much time has elapsed. Plus she gets going on something but then forgets what she was doing. So when you are on a trip, with starting times for events, airplane arrival and departure times, and connecting times arranged with other people for meetups or dinner, and you yourself have no sense of time or the passing of time, you need an external force. Thus the newest cabana boy duty, time clock management. Thus the moniker, Taskmaster. One hint, add in ten minute buffers...

You Create a Path by Walking

We made it through Riley's commencement in fine fashion, although Meagan wasn't able to wear her new fashion. Sunday dawned with rain so we bundled as best we could, got there early for a spot under cover, put on the handout translucent blue ponchos and made the best of it. The rain stopped by the time the ceremony started and by the reception the sun was out. A joyous occasion and one we'll never forget.

One of the lines from the speeches I liked the best was, "a path is made by walking". We can only walk on this cancer journey, we have no idea what awaits nor do we have the option of choosing trodden paths. Our next step is Thursday afternoon when she has her Cyberknife set up scans and mask fitting. She'll have a CT scan and a brain MRI. Then over the next 3-5 working days the Cyberknife team at Swedish will create the radiation plan. She'll then start the radiation treatments within one week of the scans. So at the latest a week from Thursday. Meagan is feeling no anxiety or stress over this step. It's just a critical component of taking the next step. She will probably start on a course of steroids in advance, and continue the steroids after treatment until any swelling from treatment has subsided. She has to be off the steroids to start her course of Interleukin-2, so it's looking like that step will occur in late June.

But one step at a time. That's how you create a path.

Cancer Free Weekend

Meagan was cleared for takeoff, so today we fly to Southern California, returning Monday morning. The occasion is Riley's graduation from Pomona College. The weather looks to be about perfect. A good thing, given Casey and I helped Meagan go shopping for a spring graduation festivity dress that only really works if the temp is north of 70 degrees. She has a number of new hats and scarves that will look great and cover up the healing scars and avoid sunburn due to her shorn head.
She does have a big old divot on her head in addition to the horseshoe scar which we haven't figured out how it got there. They may have drilled in a pressure release valve up there before the major surgery. We will ask our surgeon at the followup visit in a couple weeks.
We are still awaiting the radiation scheduler to get back to tell us when her initial scan day is, plus the schedule of radiation treatments. We were first a victim of the billing department pit of hell and their need to get preauthorization from our insurance company. The standard length of time is 7-14 days and once you get approval then you get scheduled. After I hadn't heard back the next morning of our initial radiology visit I called only to be informed of their process. Let's just say I wasn't very happy. We are now on an expedited process so should know by Tuesday but I also discovered I could sign a waiver agreeing to pay no matter what, which I readily agreed to do - so that got me moved from billing to scheduling.
But it doesn't get better my friends. We have technicians out on vacation early next week and the good doctor is on vacation the following week. They only want 4 or so days in between the scans and start of treatment (so their radiation scheme is as current and therefore effective as possible) so it could be early June before she starts. The scheduler is talking with the doctor about alternative options, it may be Meagan could get scanned next week and the doc has time to build the plan with the neurosurgeon and physicist and then once it's done even if she's on vacation, Meagan can still undergo treatment. Because at that point the treatment is driven by a computer program and robotic radiation beam delivery device and the presence of the doc is unimportant. And they have plenty of other competent radiologists and neurosurgeons on duty. So I am waiting to hear from the scheduler.
All this causes me a fair bit of stress and organizational juggling. Thankfully Meagan is unaware or uncaring. She is still living most of the the time in her right brain, we should all be so fortunate! She's had a good week of visitors and her eating has somewhat normalized. As you may have seen, she has resumed some posting on Facebook and email although it takes a while. She's ready for the treatment whenever it's scheduled (she's pretty much lost all sense of time and the passing of time) and also ready for her future treatment of the Interleukin-2 at the hospital for two weeks. As ready as if I told her we were going to run errands - no stress or anxiety.
It should be a fun and joyous weekend. It will be intetesting to see how she does with large crowds. But there will be lots of family to help guide and protect her. She still needs reminders and help walking in new places with her visual field diminishment. She needs to scan, turn her head from side to side as she walks to avoid walking into things she doesn't see on her right side. She had a few head wackage incidents this week running into open doors. Her confidence sometimes outruns her competence.
So this weekend we will try to set the cancer aside and celebrate one of life's rites of passage. We are looking forward to seeing Riley and his friends.

Cyberknife

Not the next generation of light sabers. The procedure Meagan will undergo at Swedish to irradiate part of her brain where the tumors were.

We got to really look at the brain MRIs pre and post surgery. We could see exactly where each tumor was and where the surgery was done and the area needing to be zapped.

We have the insurance preapproval underway. Hopefully next Tuesday for MRI/CT scans and mask fitting (the procedure is painless and uses a robotic arm to swivel around and hit the area from all sides and you need a mask on so you stay still and don't turn your head). Dr Vermuelen seems competent and confident. Meagan liked her a lot. Treatment will start maybe 3-7 days later after everyone approves the plan (neurosurgeon, physicist, radiologist). At this point the surgery got both tumors. They were close together. So it's a "spot weld " as Dr. Vermuelen puts it - mopping up the microcells of cancer the brain surgeon didn't get. Likely 3-5 treatments that take an hour each with set up. Exactly what the treatment is depends on the new scans which drives number of treatments, beam intensity, area covered. There is an outside chance of broader beam approach but they want it tight but still get sufficient margin. She's pretty confident the Cyberknife will do it. The after effects are short (which we need) so once the swelling goes down we can move on to the systemic treatment in the hospital with the two week Interleukin-2. That could be as little as two weeks after cyberknife treatment conclusion.

Meagan is quite nonplussed. Technology is amazing.

Not for the faint of heart

Next Tuesday we have our first visit with the neurology radiologist about the overall brain radiation plan. We know two things at this point - that she has remnants of the removed tumor which need to be addressed, plus another tumor in a different location. The technologies to address brain tumors have evolved remarkably over the last decade and using a technique of focused beam radiation, the neurology team (radiologist, physicist, neurosurgeon) uses a plan based on tumor(s) location which is able to radiate (and hopefully eliminate) identified tumors. There is usually an initial visit to discuss the scenario and plan and what is achievable (that is our Tuesday visit) followed by additional brain scans to get the latest tumor information, followed by the actual treatment (which involves realtime CT scans and MRIs and a sophisticated computer driven robotic arm delivering precise amounts of radiation in a broad field pattern to identified points using a pattern which causes very little impact to healthy brain matter but ends up concentrating on the identified area). Because this technique does impact the tumors and brain margin around them, there is swelling (this is bad), which they control through steroids. If you are on steroids though, you cannot proceed to a systemic treatment like Interleukin-2, because the steroids counteract the Interleukin-2. So you have to address the brain first, then once it is under control, move on to the systemic treatment.

Only read on if you want to read about outcomes, probabilities, and prognoses. Seriously. Now is the time to "close tab".

Next Up

Meagan's sodium levels have stabilized and Dr. Kaplan has cut her dosage of salt tabs in half. We'll keep it up until the current prescription is empty, likely by middle of next week. She continues to enjoy Fritos, potato chips, corn flakes and high protein Odwalla drinks (they are laden with sodium). Overall her appetite is great, thanks in large part to the delicious meals being provided by the Faeries, for which we are very grateful.

The Calm before...

Meagan is doing really well at home recovering from the stroke. She actually had fun with her speech therapist yesterday (who works on cognitive issues as well). Probably because we discussed focusing on the things that matter most to her right now - which is all about connecting with friends. So she is practicing typing with the goal of getting back on Facebook. She has enjoyed our new schedule - can't get started too early (nothing before 10:00am) - with then either doctor visits or home therapy and then visits with friends and family. She worries a lot about me, especially when she realized she won't drive again, because she doesn't want to be a burden, but I assured her we can make any appointment happen and me driving her or she walking as far as University Village were all doable.

We see Dr. Kaplan today to discuss next steps and get a sodium check. Most important in the short term is brain radiation. I've been reading up a lot on it. They have lots of options for narrow focused radiation beam treatments. She will have to get an MRI with contrast so they can pinpoint where the remaining cancer cells and other tumor is located. But malignant brain tumors are tough beasts. Melanoma in particular can be radiation resistant. And it's almost impossible to get every cell, meaning regrowth is highly probable. Whole brain radiation is also possible, but the side effects are undesirable. So it's a tough problem, with no great answer. In the meantime her melanoma is unchecked. Somehow we have to get tumors removed as much as possible, get the brain swelling down post radiation with no new tumors emerging, so we can have a shot at Interleukin-2 - the last remaining systemic therapy that has a chance at shutting down the disease. Apparently we can't do the IL-2 until the brain inflammation is down, so that the IL-2 doesn't confuse inflamed brain tissue with the cancer.

Thankfully she is in a positive frame of mind, anxiety free and focused on her friend and the goodness around her. One of the beneficial side effects of a brain insult and surgery. But for those of us who haven't had that "happy pill", the road ahead looks daunting.